A revision of the intensity of treatment rating scale: classifying the intensity of pediatric cancer treatment
Child; Female; Humans; Male; Questionnaires; adolescent; Preschool; Antineoplastic Combined Chemotherapy Protocols/classification/therapeutic use; Disease Specific; Neoplasms/drug therapy
Kazak AE; Hocking MC; Ittenbach RF; Meadows AT; Hobbie W; DeRosa BW; Leahey A; Kersun L; Reilly A
Pediatric Blood & Cancer
2012
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1002/pbc.23320" target="_blank" rel="noreferrer">10.1002/pbc.23320</a>
Complementary and alternative therapy use in pediatric oncology patients with failure of frontline chemotherapy
Child; Female; Humans; infant; Male; Survival Rate; Young Adult; Adult; Questionnaires; Treatment Outcome; Religion; Complementary Therapies; Treatment Failure; adolescent; Preschool; infant; Newborn; Neoplasms/therapy; Antineoplastic Agents/therapeutic use; Salvage Therapy
BACKGROUND: The use of CAM by the relapsed pediatric oncology population has largely gone unstudied. The main objective of this study was to describe the prevalence of and change in CAM use in oncology patients for whom frontline therapy had failed. Secondary objectives included describing patient/family objectives for using CAM, satisfaction with CAM, financial and time expenditures on CAM, and patient desire for physician involvement in CAM use. PROCEDURE: Fifty-four patients 0-25 years of age, for whom frontline therapy had failed, were enrolled. The subjects completed an anonymous one-time self-administered questionnaire. RESULTS: Eighty-two percent of respondents reported using CAM, 52% of which reported initiating or increasing CAM use after failure of frontline therapy. The most commonly used CAM categories were prayer/spiritual healing (83%) and oral/dietary supplements (31%). Prayer/spiritual healing was most commonly used to cure or slow the progression of cancer (59%). Oral/dietary supplements were used to improve overall health and well-being (65%). Estimates of money and time spent ranged from $0 to >$1,275 (median $225) and 1 to > 700 hr (median 10 hr). Sixty percent of CAM users reported their oncologist was unaware of their use. Most participants who used non-spiritual/prayer CAM continued use while hospitalized or while receiving chemotherapy. CONCLUSIONS: Understanding usage patterns may better help pediatric oncologists and palliative-care specialists address the needs of this population, and protect against potentially dangerous drug interactions or side effects from combined CAM and chemotherapy use.
Paisley MA; Kang T; Insogna IG; Rheingold SR
Pediatric Blood & Cancer
2011
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1002/pbc.22939" target="_blank" rel="noreferrer">10.1002/pbc.22939</a>
Evaluation of health status and health-related quality of life in a cohort of Italian children following treatment for a primary brain tumor
Child; Female; Humans; Male; Adult; Questionnaires; Italy; Survivors; adolescent; Non-U.S. Gov't; Research Support; PedPal Lit; quality of life; Health Status; Brain Neoplasms/psychology/therapy
BACKGROUND: This study is a pilot experience aiming to investigate the compliance of an institutional cohort of Italian children treated for a malignant disease and their families in completing the health utilities index2, (HUI2) and the effectiveness of this measured in terms of their health status (HS) and health-related quality of life (HRQL). It specifically, it aimed to compare the HS and the HRQL, as expressed by the HUI2 global utility score, in cohorts of patients who had brain tumors, extra-cerebral solid tumors, or leukemia/lymphoma. PROCEDURE: Fifty survivors of brain tumors, between 8 and 30 years at the time of the assessment ("self") and/or their parents ("proxy"), attending the Pediatric Oncology Out Patient clinic of Padua, Italy, completed the HUI2 questionnaire. Eighty-nine children with acute leukemia/lymphoma and 74 with extra-cerebral solid tumors and/or their parents were also assessed. RESULTS: The mean "self" and "proxy" HUI2 global utility scores in the brain tumor patients were 0.87 and 0.84, respectively, while in the cohorts of children with other solid tumors and leukemia/lymphoma, there were 0.94, 0.91, 0.96, and 0.92, respectively. The differences between the HUI2 global utility scores in the "self" and "proxy" assessment within each cohort of children were not statistically significant. In decreasing order of frequency, the attributes affected most commonly were: "emotion," "pain," "sensation," and "cognition" both by "self" and "proxy" assessment. CONCLUSIONS: In this Italian population of childhood cancer survivors the HUI2 questionnaire proved to be a user-friendly tool, which provided information regarding HS and HRQL. A larger cohort of cancer children is needed to confirm the efficacy of the HUI2 questionnaire in distinguishing groups of children on this basis by disease category.
2006
Cardarelli C; Cereda C; Masiero L; Viscardi E; Faggin R; Laverda A; Bisogno G; Perilongo G
Pediatric Blood & Cancer
2006
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
Evaluation of a pediatric palliative care educational workshop for oncology fellows
2006
Baughcum AE; Gerhardt CA; Young-Saleme T; Stefanik R; Klopfenstein KJ
Pediatric Blood & Cancer
2006
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1002/pbc.21034" target="_blank" rel="noreferrer">10.1002/pbc.21034</a>
Standards of nutritional care in pediatric oncology: results from a nationwide survey on the standards of practice in pediatric oncology. A Children's Oncology Group study
Child; Humans; quality of life; Nutritional Failure; Clinical Trials; Guideline Adherence/standards; Guidelines/standards; Malnutrition/diet therapy/etiology; Neoplasms/complications/mortality; Nutrition Surveys; Nutritional Support/methods/standards; Oncologic Nursing/standards
BACKGROUND: The prevalence of malnutrition in children with cancer ranges between 8% and 60%. Malnutrition is strongly associated with the nature of treatment and increases an individual's risk of infection. Clinical studies have suggested that nutrition intervention may decrease toxicity and improve survival in the oncology population. In order to identify the standards of practice in the nutritional management of a child with cancer, we conducted an international survey in institutions that are part of the Children's Oncology Group (COG) consortium. PROCEDURE: Surveys were submitted to 233 participating COG institutions. We requested one member in three disciplines complete the survey: physician, registered dietitian, and nurse or nurse practitioner. The survey was returned to the nutrition sub-committee of COG. RESULTS: Fifty-four percent of institutions responded to the survey. We found no consistency in the provision of nutrition services. Assessment of nutritional status does not routinely occur and different indices are employed to indicate the nutrition status of a patient. Institutions rely upon different guidelines when categorizing malnutrition. When nutrition intervention is clinically indicated, a variety of approaches are employed. CONCLUSIONS: This survey did not find standardized nutrition protocols being employed in the pediatric oncology population. The effect of varied nutrition practices on the quality of life, toxicity, and outcome in children with cancer is unknown. Prior to the initiation of clinical trials, uniform guidelines need to be developed and validated. Future clinical trials need to investigate the most efficacious method of nutrition assessment and intervention and its effect on quality of life, toxicity, and survival in children with cancer.
2006
Ladas EJ; Sacks N; Brophy P; Rogers PC
Pediatric Blood & Cancer
2006
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1002/pbc.20435" target="_blank" rel="noreferrer">10.1002/pbc.20435</a>
Use of alternative and complementary therapies in children with cancer.
PedPal Lit
2005
Martel D; Bussieres JF; Theoret Y; Lebel D; Kish S; Moghrabi A; Laurier C
Pediatric Blood & Cancer
2005
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1002/pbc.20205" target="_blank" rel="noreferrer">10.1002/pbc.20205</a>
A palliative prognostic score for terminally ill children and adolescents with cancer
Validation Studies as Topic; Validation Studies
The loss of a child is considered the hardest moment in a parent's life. Studies addressing length of survival under pediatric palliative care are rare. The aim of this study was to improve a survival prediction model for children in palliative care, as accurate information positively impacts parent and child preparation for palliative care.Sixty-five children referred to a pediatric palliative care team were followed from August 2003 until December 2006. Variables investigated (also included in previous studies) were: diagnosis, home care provider, presence of anemia, and performance status score given by the home care provider. Clinical variables such as symptom number were also used to test the score's ability to predict survival.The length of survival prognostic score was validated using the above variables. The number of symptoms at transition to palliative care does not improve the score's predictive ability. The sum of the single scores gives an overall score for each patient, dividing the population into three groups by probability of 60-day survival: Group A 80.0%, Group B 38.0%, and Group C 28.5% (P < 0.001).A pediatric palliative care score based on easily accessible variables is statistically significant in multivariate analysis. Factors that increase accuracy of life expectancy prediction enable adequate information to be given to patients and families, contributing to therapeutic decision-making issues. Pediatr Blood Cancer © 2010 Wiley-Liss, Inc.
2010
Kurashima AY; de Oliveira Latorre Maria do Rosario Dias; Camargo Beatriz de
Pediatric Blood & Cancer
2010
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1002/pbc.22644" target="_blank" rel="noreferrer">10.1002/pbc.22644</a>
Factors influencing parental readiness to let their child with cancer die
Child; Female; Humans; Male; Grief; Adult; Parent-Child Relations; Middle Aged; Attitude to Death; Professional-Family Relations; adolescent; Preschool; infant; Parents/psychology; Parent caregivers; Neoplasms/psychology; Attitude to Death; Grief; Professional-Family Relations; Neoplasms/psychology; Parents/psychology
BACKGROUND: One in four cases of childhood cancer is incurable. In these cases death can usually be anticipated and therefore preceded by a phase of palliative care. For parents, preparing to let their child die is an extraordinarily painful process. Most struggle to preserve their child. This study identified, from a parental perspective, the main factors that influence the transition from preserving life to letting go. PROCEDURE: A multi-centre, qualitative research, study was undertaken during the end-of-life (EoL) phase, comprising single or repeated interviews with 44 parents of 23 children with incurable cancer. RESULTS: We discovered that uncertainty, fragmentation and anxiety underpin the preserving life perspective. A perspective of letting go could be supported by a variety of factors. These included: Certainty that the child cannot be cured, postponed grief, the perception of suffering, the ability to disentangle needs and the ability to parent meaningfully. Hope, creating a peaceful parent-child relationship, and the attitude of professionals, could support movements in either direction. Of these, certainty, and in most cases postponed grief, were pre-conditions for the transition towards letting go. Strategies such as not challenging the parents' suppression of grief, creating certainty about the child's condition and supporting parents in efforts to redefine their parental role, supported progress towards accepting a letting go perspective. CONCLUSIONS: Parents' internal struggle between a preserving frame of mind and one of letting go is influenced by a combination of factors. However, professionals can influence some of these factors in order to facilitate this transition.
Kars MC; Grypdonck MH; Beishuizen A; Meijer-van den Bergh EM; van Delden JJ
Pediatric Blood & Cancer
2010
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1002/pbc.22532" target="_blank" rel="noreferrer">10.1002/pbc.22532</a>
Anxiety is contagious-symptoms of anxiety in the terminally ill child affect long-term psychological well-being in bereaved parents
Child; Female; Humans; infant; Male; Young Adult; Adult; Parent-Child Relations; quality of life; adolescent; Preschool; Adaptation; Psychological; bereavement; Terminally Ill/psychology; infant; Charting the Territory; Newborn; Parents/psychology; Anxiety/epidemiology/etiology/psychology; Depression/epidemiology; Neoplasms/psychology; Sweden/epidemiology
BACKGROUND: We studied the relation between unrelieved symptoms in terminally ill children and the psychological well-being in the bereaved parents 4-9 years after their loss. PROCEDURE: We contacted parents in Sweden who had lost a child to a malignancy 1992-1997. The parents were asked to assess symptoms affecting their child's well-being during his or her last month of life, and their own current psychological well-being. RESULTS: Altogether 449/561 (80%) eligible parents supplied information on 19 specific symptoms that may occur in children with a malignancy and how each of these symptoms had affected their child's well-being during his or her last month of life (not applicable, none, low, moderate, or severe). These results were linked to questions concerning the parents' self-assessed mental health. Parents of children who were affected by disturbed sleep also had increased risk to develop these symptoms; RR 2.0 [1.4-2.9] for depression, 1.8 [1.3-2.5] for anxiety, 1.5 [1.2-1.8] for decreased psychological well-being, and 1.5 [1.3-1.9] for decreased quality of life. CONCLUSIONS: Bereaved parents whose children were affected by anxiety or disturbed sleep due to anxiety or pain had an increased risk of long-term psychological morbidity. Reducing psychological complications in seriously ill children may also improve the psychological well-being in bereaved parents.
Jalmsell L; Kreicbergs U; Onelov E; Steineck G; Henter JI
Pediatric Blood & Cancer
2010
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1002/pbc.22418" target="_blank" rel="noreferrer">10.1002/pbc.22418</a>
Comparing pediatric deaths with and without hospice support
Child; Humans; Palliative Care; Terminal Care; Pediatrics; Attitude of Health Personnel; Michigan; quality of life; retrospective studies; hospice care
BACKGROUND: Although pediatric hospice care is commonly accepted as a beneficial intervention, the incremental advantage over end-of-life care delivered without engaging hospice remains unknown. The primary objective of this study was to describe differences in pediatric end-of-life care when delivered with and without hospice support, as perceived by the medical provider. PROCEDURE: A retrospective survey of medical providers was conducted in 2005 over a 2-month period at a single institution, the Helen DeVos Children's Hospital (HDVCH). Medical providers with self-determined experience in pediatric end-of-life care were asked to separately provide positive and negative comments about their experience with hospice. Additionally they were asked to describe differences between children under their supervision who died with and without hospice care. Medical provider comments and comparisons of experiences in caring for children dying with and without hospice involvement are described. RESULTS: Out of 157 responders, 43 reported positive comments about the hospice intervention. Non-medical support and location of death were the most frequently cited benefits. Nineteen responders provided negative comments about hospice; all involving feelings of lost hope, intrusion, or distrust. When asked to directly compare deaths with and without hospice support, 44 of 51 (86%) responders favored hospice. The most cited reason for preferring hospice involvement was better provision of non-medical services. CONCLUSIONS: The majority of pediatric providers in this survey observed an advantage to utilizing hospice care for dying children as compared to providing end-of-life care without hospice involvement.
2010
Dickens DS
Pediatric Blood & Cancer
2010
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1002/pbc.22413" target="_blank" rel="noreferrer">10.1002/pbc.22413</a>
Impact of a pediatric palliative care program
2010
Wolfe J; Robert R; Sommerer A; Volz-Fleckenstein M
Pediatric Blood & Cancer
2010
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1002/pbc.22272" target="_blank" rel="noreferrer">10.1002/pbc.22272</a>
Methadone analgesia for children with advanced cancer
Methadone
BACKGROUND: Methadone is frequently used in the treatment of adults with advanced cancer. A criticism of relevant research is the use of single or fixed doses, which does not reflect use in clinical practice. Literature about use of methadone in the treatment of pediatric patients is limited to case reports. The objective of this study is to describe methadone use as primary opioid analgesic for advanced pediatric cancer over a 6.5-year period. PROCEDURE: All 17 patients who received methadone as their primary opioid analgesic through the Northern Alberta Children's Cancer Program from January 2000 to June 2007 were included. Children who received combination opioid therapy were excluded. RESULTS: Rotation to methadone was usually by a complete switch from primary opioid. Conversion ratios of morphine equivalent daily dose (MEDD)/methadone daily dose (TMDD) ranged widely from 1:2 in one patient with sudden pain crisis just prior to death, to 60:1 in a patient who had been treated with opioids for months. Methadone was used for a total of 925 patient-days. There were no significant adverse events in any patient, and all but one patient remained on methadone until the time of their death. Clinically, the effectiveness of analgesia clearly improved at time of conversion in 16 patients. CONCLUSION: With close monitoring, methadone therapy can be done safely in pediatric oncology patient populations in both inpatient and outpatient settings. Our experience suggests improvement in analgesia with the use of methadone, with 16 patients remaining on methadone until they died. Pediatr Blood Cancer (c) 2008 Wiley-Liss, Inc.
2008
Davies D; Devlaming D; Haines C
Pediatric Blood & Cancer
2008
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Journal Article
<a href="http://doi.org/10.1002/pbc.21584" target="_blank" rel="noreferrer">10.1002/pbc.21584</a>
Integration of a palliative and terminal care center into a comprehensive pediatric oncology department
2008
Golan H; Bielorai B; Grebler D; Israeli Shai; Rechavi G; Toren A
Pediatric Blood & Cancer
2008
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Journal Article
<a href="http://doi.org/10.1002/pbc.21476" target="_blank" rel="noreferrer">10.1002/pbc.21476</a>
Integration of a palliative and terminal care center into a comprehensive pediatric oncology department
location of death
BACKGROUND: The sharp division between curative cancer therapy and palliative care results in the late introduction of palliative care and a high incidence of suffering in children with cancer. We established a Palliative Care Unit (PCU) that is fully integrated with the Pediatric Hematology Oncology Department (PHOD). We wished to explore the impact of such integrative model on patterns of hospitalizations and exposure to palliative care of pediatric oncology patients. PROCEDURES: Retrospective search of medical records of patients admitted to the PHOD since PCU establishment in 1999, and of children who died from progressive disease between 1990 and 2005 was performed. Differences in clinical and prognostic variables between PCU and non-PCU patients, and differences in location of death before and after PCU establishment were evaluated. RESULTS: The majority (59%) of patients, who were hospitalized after the PCU establishment, were hospitalized in the PCU, including 49% of the good prognosis patients and 91% of the poor prognosis patients. Poor prognosis patients were hospitalized in the PCU earlier and with higher frequency compared to children with curable disease. After PCU opening there was a significant decline in the percentage of patients who died in the general pediatric ward, hematology-oncology ward, and at home from 40%, 26% and 28% to 4%, 8%, and 16%, respectively. CONCLUSIONS: Our integrative model results in exposure of the majority of children with cancer to palliative care. For poor prognosis patients, palliative care is introduced early enough to allow gradual transition from symptom control after diagnosis to end of life care. Pediatr Blood Cancer (c) 2008 Wiley-Liss, Inc.
2008
Hana G; Bella B; Dorit G; Shai I; Gideon R; Amos T
Pediatric Blood & Cancer
2008
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Journal Article
<a href="http://doi.org/10.1002/pbc.21476" target="_blank" rel="noreferrer">10.1002/pbc.21476</a>
Do as I say or die: compliance in adolescents with cancer
Adolescent Transitions; cancer; Adolescents; Compliance
Adolescence is a time of great physical change and maturing brain function. This leads to adolescents establishing independence and coming to terms with the implications of their own actions. Not surprisingly, this phase is characterized by experimentation with both constructive and destructive behavior. Studies in many areas of chronic illness have shown that adolscents frequently neglect their care and revolt against the rules established during their childhood. It is therefore to be expected that teenagers diagnosed with a life threatening illness, such as cancer, may on occasion not fully comply with their therapy. They way forward includes improving communication and fully involving these young persons in their treatment planning, thereby moving from compliance to concordance. Additional improvements should be sought in medication, early recognition and support of familial or social problems, and using a specific adolescent multidisciplinary team. Research should not be limited to clinical trials.
2008
Windebank KP; Spinetta J
Pediatric Blood & Cancer
2008
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Journal Article
<a href="http://doi.org/10.1002/pbc.21460" target="_blank" rel="noreferrer">10.1002/pbc.21460</a>
Symptoms in the palliative phase of children with cancer
adolescent; Child; Female; Humans; infant; Male; retrospective studies; Palliative Care; Neoplasms; Pain; Pain Management; Terminal Care; Physician-Patient Relations; Parent-Child Relations; Parents; Emotions; Questionnaires; Attitude to Death; Professional-Family Relations; social support; Age Factors; caregivers; Fatigue; Fear; Anorexia; Leukemia; Treatment Failure; Gastrointestinal Diseases; Stress; Preschool; Psychological; Brain neoplasms; Mobility Limitation
BACKGROUND: The aim of the study was to make a comprehensive inventory of the physical, psychological, and social symptoms of children with cancer and their parents during the palliative phase and the extent to which health professionals address those symptoms. PROCEDURE: Forty parents of children who died 1-3 years prior to data collection (structured questionnaire) were invited to participate in the study. RESULTS: The response rate was 32 out of 40 parents (80%). Most frequently mentioned physical symptoms were pain, poor appetite, and fatigue. The children's most mentioned psychological symptoms were sadness, difficulty in talking to their parents about their feelings regarding illness and death and fear of being alone. The symptoms of fear of death of the child and fear of physical symptoms were most frequently mentioned parents' psychological symptoms. Health professionals addressed 82% of the children's physical symptoms, 43% of the children's psychological symptoms, and 56% of the parents' psychological symptoms. Parents indicated that after professional attention the proportion of children's physical symptoms that were completely or partially resolved was 18 and 26%, respectively. For children's psychological symptoms the figures were 9 and 25%, respectively, and for parents' psychological symptoms 2 and 23%, respectively. CONCLUSIONS: The burden of symptoms of the child with cancer during the palliative phase and their parents is high. Health professionals focus mainly on the physical symptoms of the child. Relief of symptoms could not be achieved for a large proportion of symptoms. Further prospective research is necessary to investigate the kind, frequency and intensity of symptoms in order to tailor optimal palliative care to the needs of both child and parent.
2007-08
Theunissen JMJ; Hoogerbrugge PM; van Achterberg T; Prins JB; Vernooij-Dassen M; van den Ende CHM
Pediatric Blood & Cancer
2007
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Journal Article
<a href="http://doi.org/10.1002/pbc.21042" target="_blank" rel="noreferrer">10.1002/pbc.21042</a>
Patient-controlled analgesia at the end of life at a pediatric oncology institution
opioid analgesics; pain control; Pediatric pain control
2015-07
Anghelescu DL; Snaman JM; Trujillo L; Sykes AD; Yuan Y; Baker JN
Pediatric Blood & Cancer
2015
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Journal Article
<a href="http://doi.org/10.1002/pbc.25493" target="_blank" rel="noreferrer">10.1002/pbc.25493</a>
Differences in end-of-life communication for children with advanced cancer who were referred to a palliative care team
BACKGROUND: There is a general consensus that involving a specialized palliative care team in the care of children with advanced cancer can help optimize end-of-life communication; however, how this compares to standard oncology care is still unknown. We aimed to determine whether there was an association between specialist palliative care involvement and improved end-of-life communication for children with advanced cancer and their families. PROCEDURE: We administered questionnaires to 75 bereaved parents (response rate 54%). Outcome measures were presence or absence of 11 elements related to end-of-life communication. RESULTS: Parents were significantly more likely to receive five communication elements if their child was referred to a palliative care team. These elements are: discussion of death and dying with parents by the healthcare team (P < 0.01); discussion of death and dying with child by the healthcare team when appropriate (P < 0.01); providing parents with guidance on how to talk to their child about death and dying when appropriate (P < 0.01); preparing parents for medical aspects surrounding death (P = 0.02) and sibling support (P = 0.02). Children were less likely to be referred to a palliative care team if they had a hematologic malignancy. CONCLUSIONS: Children who receive standard oncology care are at higher risk of not receiving critical communication elements at end of life. Strategies to optimize end-of-life communication for children who are not referred to a palliative care team are needed. Pediatr Blood Cancer © 2015 Wiley Periodicals, Inc.
2015-04
Kassam A; Skiadaresis J; Alexander S; Wolfe J
Pediatric Blood & Cancer
2015
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Journal Article
<a href="http://doi.org/10.1002/pbc.25530" target="_blank" rel="noreferrer">10.1002/pbc.25530</a>
Adolescent end of life preferences and congruence with their parents' preferences: results of a survey of adolescents with cancer
BACKGROUND: Little is known about how well family members accurately represent adolescents when making EOL decisions on their behalf. This study reports on surveys given to adolescents with cancer and their parents as part of a larger study facilitating advanced care discussions, as well as the results of a survey for health care providers. PROCEDURE: Trained facilitators administered surveys orally to adolescents and families in the intervention arm of the FAmily CEntered Advance Care Planning (ACP) for Teens with Cancer (FACE-TC) study. In addition, a post-hoc survey was sent to oncology providers. RESULTS: Seventeen adolescent/family dyads completed this survey. Seventy five percent of adolescents believed it was appropriate to discuss EOL decisions early and only 12% were not comfortable discussing death. Most preferred to be at home if dying. There were substantial areas of congruence between adolescents and their surrogates, but lower agreement on the importance of dying a natural death, dying at home and "wanting to know if I were dying." Among providers, 83% felt their patients' participation in the study was helpful to the patients and 78% felt it was helpful to them as providers. CONCLUSIONS: Adolescents with cancer were comfortable discussing EOL, and the majority preferred to talk about EOL issues before they are facing EOL. There were substantive areas of agreement between adolescents and their surrogates, but important facets of adolescents' EOL wishes were not known by their families, reinforcing the importance of eliciting individual preferences and engaging dyads so parents can understand their children's wishes.
2015-04
Jacobs S; Perez J; Cheng YI; Sill A; Wang J; Lyon ME
Pediatric Blood & Cancer
2015
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Journal Article
<a href="http://doi.org/10.1002/pbc.25358" target="_blank" rel="noreferrer">10.1002/pbc.25358</a>
Parental Grief Following the Death of a Child from Cancer: The Ongoing Odyssey
bereavement; Qualitative Research; Continuity of Patient Care; Counseling; Self-Help Groups; Grief; cancer
BACKGROUND: The death of a child is a devastating event that results in profound grief and significant psychosocial and physical morbidities in parents. The parental grief journey is a complex phenomenon necessitating the utilization of newer models of bereavement with a focus on relationships and exploration of parents' perceived meanings of the experience. OBJECTIVES: To further characterize the grief journey of parents whose child died from cancer in order to better identify parents who can benefit from additional bereavement support and design strategies to improve bereavement services for these parents. DESIGN: We conducted focus group sessions with 11 bereaved parents. The parents were given two prompts to describe their grief journey before and after their child's death, and their responses in a narrative form were audio-recorded. The responses were coded and studied independently by semantic content analysis. RESULTS: Collation and analysis of the coded responses to both prompts results in the emergence of four concepts from the parental narratives: (1) description of the grief trajectory and evolution of grief over time, (2) mechanisms of parental coping throughout the grief journey, (3) factors that exacerbate parental grief, and (4) sources of parental support throughout the grief journey. CONCLUSIONS: The narratives highlighted that parents whose child died of cancer experience a unique and evolving form of grief and they wish to continue their bond with the deceased child. We recommend that healthcare providers and institutions incorporate support systems into a comprehensive bereavement program for families of children who die from cancer.
2016-09
Snaman JM; Kaye EC; Torres C; Gibson D; Baker JN
Pediatric Blood & Cancer
2016
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Journal Article
<a href="http://doi.org/10.1002/pbc.26046" target="_blank" rel="noreferrer">10.1002/pbc.26046</a>
High-risk communication at the time of hospice enrollment: Standardizing pediatric hospital to hospice sign out
end-of-life care; handoff; hospice; Palliative Care; pediatric oncology; sign out
2018-01
Brock KE; Mullaney E
Pediatric Blood & Cancer
2018
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<a href="http://doi.org/10.1002/pbc.26957" target="_blank" rel="noreferrer">10.1002/pbc.26957</a>
Pain management at home in children with cancer: A daily diary study
Pain; Pain Management; Pediatric oncology; daily diary; pain at home
Background With the transition of care of cancer patients from the hospital to the home setting, parents are largely responsible for children's pain management. Children's cancer pain is undermanaged, yet, there is little empirical data on the occurrence and management of cancer pain in the home setting. The purpose of the present study, therefore, was to employ a daily diary protocol to examine barriers to pain management of children's cancer pain by parents at home. Procedure Parent–child dyads were recruited from the Cancer Institute at a major children's hospital in Southern California. A total of 45 patient/parent pairs completed baseline data on demographic and personality characteristics, children's quality of life, and parental beliefs regarding analgesic use for children and then completed daily diaries of pain and analgesic administration for 14 consecutive days. Results Most children were reported to experience chronic pain while undergoing treatment for cancer, yet overall analgesic administration at home was low. Parents who reported misconceptions regarding analgesic use for children were less likely to administer pain medication to children. Children who were less shy, more social, or had lower quality of life were more likely to receive analgesics. Conclusions A significant proportion of children receiving outpatient treatment for cancer were rated as experiencing chronic pain and pain was not optimally managed in the home setting. Further understanding and addressing barriers to children's cancer pain management in the home setting will aid in alleviating unnecessary pain in this vulnerable patient population. Pediatr Blood Cancer © 2013 Wiley Periodicals, Inc.
2013
Fortier MA; Wahi A; Bruce C; Maurer EL; Stevenson R
Pediatric Blood & Cancer
2013
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1002/pbc.24907" target="_blank" rel="noreferrer">10.1002/pbc.24907</a>
Successful use of indwelling tunneled catheters for the management of effusions in children with advanced cancer
Pediatric oncology; ascites; catheters; indwelling; malignant; pleural effusion
Background Malignant pleural effusion (MPE) and ascites (MA) negatively impact quality of life of palliative patients. Treatment options are limited. This study's purpose is to examine the experience with indwelling tunneled catheters (ITCs) for management of MPE/MA in children with advanced cancer. Methods Children with MPE/MA who underwent ITC insertion (2007–2012) were retrospectively reviewed. Clinical, procedural, complication and outcome details were analyzed. Results PleurX® ITCs (n = 12) were inserted in eight patients (5–18 years) with sarcoma (11 MPE, 1 MA), achieving symptom relief and facilitating discharge home post ITC (median 2 days). Median survival following ITC was 51 days. There were two major complications: pain (n = 1), late site infection (n = 1), and five minor complications. Drainage ceased in four patients (pleurodesis/tumor progression). At time of death, six ITCs (five patients) were still in situ. Conclusions ITC appears to be a safe, effective treatment for MPE/MA in advanced pediatric cancer, achieving symptomatic relief and discharge home. Pediatr Blood Cancer © 2013 Wiley Periodicals, Inc.
2013
den Hollander BS; Connolly BL; Sung L; Rapoport A; Zwaan Cm; Grant RM; Parra D; Temple MJ
Pediatric Blood & Cancer
2013
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Journal Article
<a href="http://doi.org/10.1002/pbc.24902" target="_blank" rel="noreferrer">10.1002/pbc.24902</a>
Child-rearing in the context of childhood cancer: Perspectives of parents and professionals
psychosocial; Pediatric; cancer; parenting; childhood; Child Rearing
Background Elevated distress has been well documented among parents of children with cancer. Family systems theories suggest that cancer-related stressors and parental distress have the potential to affect child-rearing practices, but this topic has received limited empirical attention. The present work examined self-reported child-rearing practices among mothers and fathers of children with cancer and matched comparisons. Procedure Medical and psychosocial professionals with expertise in pediatric oncology selected items from the Child-Rearing Practices Report (CRPR) likely to differentiate parents of children with cancer from matched comparison parents. Then, responses on these targeted items were compared between parents of children with cancer (94 mothers, 67 fathers) and matched comparisons (98 mothers, 75 fathers). Effect sizes of between-group differences were compared for mothers versus fathers. Results Pediatric oncology healthcare providers predicted that 14 items would differentiate child-rearing practices of parents of children with cancer from parents of typically developing children. Differences emerged on six of the 14 CRPR items. Parents of children with cancer reported higher levels of spoiling and concern about their child's health and development than comparison parents. Items assessing overprotection and emotional responsiveness did not distinguish the two groups of parents. The effect size for the group difference between mothers in the cancer versus comparison groups was significantly greater than that for fathers on one item related to worry about the child's health. Conclusion Parents of children with cancer report differences in some, but not all, domains of child-rearing, as predicted by healthcare professionals. Pediatr Blood Cancer © 2013 Wiley Periodicals, Inc.
2013
Long KA; Keeley L; Reiter-Purtill J; Vannatta K; Gerhardt CA; Noll RB
Pediatric Blood & Cancer
2013
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Journal Article
<a href="http://doi.org/10.1002/pbc.24556" target="_blank" rel="noreferrer">10.1002/pbc.24556</a>
Safety and efficacy of aprepitant for chemotherapy-induced nausea and vomiting in pediatric patients: A prospective, observational study
Pediatric patients between the ages of 12 months and 17 years with a confirmed malignancy who were scheduled to receive aprepitant as part of triple therapy antiemetic prophylaxis for a cycle of moderately- or highly emetogenic chemotherapy were eligible for enrollment. Patients were evaluated for the incidence of nausea, episodes of emesis, interference with activities of daily living (ADLs), and appetite through utilization of a patient survey. Eleven patients were enrolled for a total of 20 patient encounters, mean age 9.55 ± 4.85 (range, 12 months-17 years). Aprepitant was well-tolerated and complete response (CR) rate was 38.9%. Pediatr Blood Cancer © 2013 Wiley Periodicals, Inc.
2013-12
Bodge M; Shillingburg A; Paul S; Biondo L
Pediatric Blood & Cancer
2013
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Journal Article
<a href="http://doi.org/10.1002/pbc.24901" target="_blank" rel="noreferrer">10.1002/pbc.24901</a>
Parent and clinician preferences for location of end-of-life care: Home, hospital or freestanding hospice?
adolescent; Child; Female; Humans; Male; Neoplasms; Terminal Care; home care services; hospice care; Parents; Prognosis; Questionnaires; Follow-Up Studies; Attitude to Death; Physicians; Choice Behavior; Residence Characteristics; Hospitals; quality of life; Preschool
BACKGROUND: Current options for location of end-of-life (EOL) care for children with cancer include home, hospital, and freestanding pediatric hospice (FSPH). However, access to these options varies greatly depending on geographical location. We aimed to determine bereaved parent and clinician preferences for location to EOL care and death. PROCEDURE: We administered questionnaires to 75 bereaved parents (response rate 54%) and 48 pediatric oncology clinicians (response rate 91%) at a large teaching hospital. Main outcome measure was parent and clinician ranking for preferred location of EOL care and death if given the options of home, hospital or FSPH. RESULTS: Majority of parents and clinicians ranked home as their first choice for EOL care (70.2% and 87%, respectively) and death (70.8% and 89.1%, respectively). Compared to clinicians, parents gave a higher ranking to hospital (P < 0.01) and lower ranking to FSPH (P < 0.01) as the preferred location for EOL care and death. Congruence between actual and preferred location of EOL care was more likely when a palliative care team was involved (P < 0.01) and less likely for children with haematologic malignancies (P = 0.03). CONCLUSIONS: Parents and clinicians prefer home as the location for EOL care and death for children with cancer. Hospital based palliative care is a preferred alternative if home is not desired. FSPH is a relatively recent phenomena and further research needs to be directed towards understanding its cost benefit in comparison to home and hospital-based EOL care. Pediatr Blood Cancer © 2013 Wiley Periodicals, Inc.
2013-11
Kassam A; Skiadaresis J; Alexander S; Wolfe J
Pediatric Blood & Cancer
2013
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Journal Article
<a href="http://doi.org/10.1002/pbc.24872" target="_blank" rel="noreferrer">10.1002/pbc.24872</a>
Fatigue in adolescents with cancer compared to healthy adolescents
adolescent; Female; Humans; Male; Neoplasms; Fatigue; Affect; Depression
BACKGROUND: Cancer-related fatigue is one of the most pervasive and debilitating side-effects of cancer treatment and adolescents consistently rate cancer-related fatigue as one of the most distressing aspects of treatment. Because fatigue is also high in adolescents without cancer, the current study aims to describe fatigue in adolescents with cancer relative to a control group and to identify associates of such fatigue. Knowing this is important for understanding the extent of the problem in adolescents with cancer relative to healthy adolescents and for understanding who is most at risk for fatigue and related distress. PROCEDURE: Adolescents with cancer and their caregivers (n = 102) and adolescents without a history of chronic health conditions and their caregivers (n = 97) completed the Multidimensional Fatigue Scale and measures of depression, quality of life (QoL), affect, coping, and family functioning. RESULTS: Adolescents with cancer and their caregivers reported significantly more adolescent fatigue across all domains (with the exception of adolescent reports of cognitive fatigue) relative to adolescents without chronic health conditions. Higher fatigue was significantly related to adolescent report of more symptoms of depression, poorer QoL, higher negative affect, less positive affect, and behavioral disengagement coping style. Fatigue was not related to active coping or family functioning. CONCLUSIONS: Adolescents with cancer experience significantly more fatigue than peers without chronic health conditions. Reports of fatigue are closely related to multiple indicators of psychosocial well-being, suggesting that fatigue may be an important cancer-related symptom to assess and manage to improve adolescent QoL.
2013-11
Daniel LC; Brumley LD; Schwartz LA
Pediatric Blood & Cancer
2013
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Journal Article
<a href="http://doi.org/10.1002/pbc.24706" target="_blank" rel="noreferrer">10.1002/pbc.24706</a>
Pediatric oncology providers' perceptions of barriers and facilitators to early integration of pediatric palliative care
Female; Humans; Male; Palliative Care; Neoplasms; Pediatrics; Adult; Aged; Middle Aged; Health Personnel; Focus Groups; Medical Oncology; Practice; Palliative Care; Attitudes; Health Knowledge
BACKGROUND: Pediatric patients experience significant symptoms during cancer treatment. Symptom management is frequently inadequate. We studied perceptions of pediatric oncology care providers regarding early integration of palliative care (PC) for pediatric patients to identify barriers and facilitators that might assist in understanding how care could be improved. PROCEDURES: Pediatric oncology providers were recruited to participate in four focus groups. A proposal for early integration of a pediatric palliative care team (PPCT) was presented and followed by a facilitated discussion. Data were analytically categorized into themes by three independent coders using constant comparative analysis and crystallization techniques. A consensus approach was used to identify final themes. RESULTS: Barriers to the proposed care model of early integration of a PPCT included provider role, conflicting philosophy, patient readiness, and emotional influence and were more prevalent in the physician participants compared to nurse practitioner, nursing, and social work participants. Facilitators included patient eligibility, improved patient care, education, and evidence-based medicine. Though all participants were invested in providing optimal patient care, physician participants believed the current standard of care model is meeting the needs of patients and family, while the nurse practitioner, nursing, and social work participants working on the same healthcare team believed the proposed care model would improve the overall care of children diagnosed with cancer. CONCLUSIONS: Differing perceptions among healthcare providers regarding the care of children with cancer suggest that team functioning could be improved. Avenues for pilot testing early integration of PC could provide useful information for a next study.
2013-11
Dalberg T; Jacob-Files E; Carney PA; Meyrowitz J; Fromme EK; Thomas G
Pediatric Blood & Cancer
2013
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Journal Article
<a href="http://doi.org/10.1002/pbc.24673" target="_blank" rel="noreferrer">10.1002/pbc.24673</a>
Parent perceptions of the quality of information received about a child's cancer
adolescent; Child; Cross-Sectional Studies; Female; Humans; infant; Male; Neoplasms; Adult; Parents; Questionnaires; Professional-Family Relations; Preschool; Health Communication
BACKGROUND: Parents' perceptions of the quality of information communicated by their child's oncologist about the child's cancer are not well understood. PROCEDURE: We conducted a cross-sectional survey of 194 parents of children with cancer (response rate 70%), treated at the Dana-Farber Cancer Institute and Boston Children's Hospital, Boston, Mass, and the children's physicians. Parents were asked to report the quality of information received about the child's cancer in several domains. RESULTS: Most parents reported that information about their child's cancer had been excellent (49%) or good (41%) overall, and ratings were similar for information about diagnosis (P = 0.62) and treatment (P = 0.59). Fewer parents felt they received high quality information about how cancer treatment is working (P < 0.001), likelihood of cure (P < 0.001), what the diagnosis means for the future (P < 0.001), and whether there is a cause for the child's cancer (P < 0.001). In multivariable models, parents were more likely to consider information of high quality when they also rated physician communication style highly. The accuracy of their knowledge on likelihood of cure and the child's future limitations, however, was not associated with quality ratings. CONCLUSIONS: Although parents feel that they have received high quality cancer information overall, parents feel they receive lower quality information about issues relating to the child's future. Yet quality ratings are not associated with their actual knowledge. Parent perceptions of quality represent one, but not the only, facet of communication quality.
2013-11
Kaye E; Mack JW
Pediatric Blood & Cancer
2013
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Journal Article
<a href="http://doi.org/10.1002/pbc.24652" target="_blank" rel="noreferrer">10.1002/pbc.24652</a>
Physical activity (PA) and sleep among children and adolescents with cancer
adolescent; Child; Female; Humans; Male; Neoplasms; Fatigue; Motor Activity; Sleep; Actigraphy
BACKGROUND: Although sleep and physical activity often are impaired among adult cancer patients, there is limited data among pediatric oncology populations. We conducted a prospective study to investigate the relationship between physical activity (PA) and sleep among children with cancer. PROCEDURE: Between 11/12/09 and 02/06/12, PA while awake and sleep variables were assessed by actigraphy collected over 7 days in 36 children (age range 8-18 years) with cancer (23 leukemia/lymphoma, 5 brain tumor, 8 solid tumor). Sleep diaries were used to determine sleep time, sleep quality, and morning mood. Fatigue was assessed at study initiation using fatigue instruments. RESULTS: Participants had impaired sleep based upon normative data compiled from multiple studies of more than 1,700 healthy children from 1 to 18 years of age [1], including decreased total sleep time (mean 6.6 hours, standard deviation (SD) 1.3 hours), increased wake after sleep onset (WASO; mean 2 hours, SD 1.4 hours), increased awakenings during sleep (mean 28.3 wake bouts, SD 7.8 bouts), and decreased sleep efficiency (mean 74.2%, SD 13.3%). Fatigue correlated with self-reported sleep quality but not with disturbances in sleep as measured by actigraphy. In longitudinal models that controlled for age, diagnosis group, gender, race, and steroid use, higher average activity, as measured by actigraphy, was associated with improved sleep quantity (P = 0.005) and efficiency (P = 0.001). CONCLUSION: Pediatric oncology patients demonstrate impaired sleep. Greater PA was significantly associated with improved sleep quantity and efficiency in pediatric oncology participants. As a potentially modifiable factor, PA may offer a mechanism to improve sleep in pediatric oncology patients.
2013-11
Orsey AD; Wakefield DB; Cloutier MM
Pediatric Blood & Cancer
2013
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Journal Article
<a href="http://doi.org/10.1002/pbc.24641" target="_blank" rel="noreferrer">10.1002/pbc.24641</a>
Racial and ethnic differences in hospice enrollment among children with cancer
adolescent; Child; Female; Humans; Male; Neoplasms; hospice care; Adult; Patient Acceptance of Health Care; Hispanic Americans; Preschool; Texas
BACKGROUND: Hospice is an important provider of end of life care. Adult minorities are less likely to enroll on hospice; little is known regarding the prevalence of pediatric hospice use or the characteristics of its users. Our primary objective was to determine whether race/ethnicity was associated with hospice enrollment in children with cancer. We hypothesized that minority (Latino) race/ethnicity is negatively associated with hospice enrollment in children with cancer. PROCEDURE: In this single-center retrospective cohort study, inclusion criteria were patients who died of cancer or stem cell transplant between January 1, 2006 and December 31, 2010. The primary outcome variable was hospice enrollment and primary predictor was race/ethnicity. RESULTS: Of the 202 patients initially identified, 114 met inclusion criteria, of whom 95 were enrolled on hospice. Patient race/ethnicity was significantly associated with hospice enrollment (P = 0.02), the association remained significant (P = 0.024) after controlling for payor status (P = 0.995), patient diagnosis (P = 0.007), or religion (P = 0.921). Latinos enrolled on hospice significantly more often than patients of other races. Despite initial enrollment on hospice however, 34% of Latinos and 50% of non-Latinos had withdrawn from hospice at the time of death (P = 0.10). Race/ethnicity was not significantly associated with dying on hospice. CONCLUSIONS: These results indicate that race/ethnicity and diagnosis are likely to play a role in hospice enrollment during childhood. A striking number of patients of all race/ethnicities left hospice prior to death. More studies describing the impact of culture on end of life decision-making and the hospice experience in childhood are warranted.
2013-10
Thienprayoon R; Lee SC; Leonard D; Winick N
Pediatric Blood & Cancer
2013
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Journal Article
<a href="http://doi.org/10.1002/pbc.24590" target="_blank" rel="noreferrer">10.1002/pbc.24590</a>
Grief reactions and impact of patient death on pediatric oncologists
Pediatric; Grief; emotional well-being; oncologists; patient death
Background To examine pediatric oncologists' grief reactions to patient death, and the impact patient death has on their personal and professional lives. Procedure The grounded theory method was used. Data was collected between March 2012 and July 2012 at two academic centres in Canada. Twenty-one out of 34 eligible pediatric oncologists at different stages of their career were recruited and interviewed about their experiences with patient death. Inclusion criteria were: being able to speak English and having had a patient die in their care. The participants formed three groups of oncologists at different stages of career including: fellows, junior oncologists, and senior oncologists who varied in sub-specialties, gender, and ethnicities. Results Pediatric oncologists reported a range of reactions to patient death including sadness, crying, sleep loss, exhaustion, feeling physically ill, and a sense of personal loss. They also reported self-questioning, guilt, feelings of failure and helplessness. The impact of these deaths had personal consequences that ranged from irritability at home, feeling disconnected from family members and friends, and becoming more desensitized towards death, to gaining a greater and more appreciative perspective on life. Professional impacts included concern about turnover or burnout at work and improving holistic care as a result of patient deaths. Conclusions Grief over patient death and the emotional labour involved in these losses are a robust part of the pediatric oncology workplace and have major impacts on pediatric oncologist's personal and professional lives. Interventions that focus on how to help pediatric oncologists deal with these reactions are needed. Pediatr Blood Cancer © 2014 Wiley Periodicals, Inc.
2014-09
Granek L; Bartels U; Scheinemann K; Labrecque M; Barrera M
Pediatric Blood & Cancer
2014
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Journal Article
<a href="http://doi.org/10.1002/pbc.25228" target="_blank" rel="noreferrer">10.1002/pbc.25228</a>
End-of-life care in pediatric neuro-oncology
brain cancer; end of life; neuro-oncology; supportive therapy
BACKGROUND: The management of children with cancer during the end-of-life (EOL) period is often difficult and requires skilled medical professionals. Patients with tumors of the central nervous system (CNS) with relapse or disease progression might have additional needs because of the presence of unique issues, such as neurological impairment and altered consciousness. Very few reports specifically concerning the EOL period in pediatric neuro-oncology are available. PROCEDURE: Among all patients followed at our center during the EOL, we retrospectively analyzed data from 39 children and adolescents with brain tumors, in order to point out on their peculiar needs. RESULTS: Patients were followed-up for a median time of 20.1 months. Eighty-two percent were receiving only palliative therapy before death. Almost half the patients (44%) died at home, while 56% died in a hospital. Palliative sedation with midazolam was performed in 58% of cases; morphine was administered in 51.6% of cases. No patient had uncontrolled pain. CONCLUSIONS: The EOL in children with advanced CNS cancer is a period of active medical care. Patients may develop complex neurological symptoms and often require long hospitalization. We organized a network-based collaboration among the reference pediatric oncology center, other pediatric hospitals and domiciliary care personnel, with the aim to ameliorate the quality of care during the EOL period. In our cohort, palliative sedation was widely used while no patients died with uncontrolled pain. A precise process of data collection and a better sharing of knowledge are necessary in order to improve the management of such patients. Pediatr Blood Cancer © 2014 Wiley Periodicals, Inc.
2014-08
Vallero Stefano G; Lijoi S; Bertin D; Pittana LS; Bellini S; Rossi F; Peretta P; Basso ME; Fagioli F
Pediatric Blood & Cancer
2014
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Journal Article
<a href="http://doi.org/10.1002/pbc.25160" target="_blank" rel="noreferrer">10.1002/pbc.25160</a>
Development of a quality of life instrument for children with advanced cancer: The pediatric advanced care quality of life scale (PAC-QoL)
quality of life; measure; oncology
BACKGROUND: There is currently no published, validated measures available that comprehensively capture quality of life (QoL) symptoms for children with poor-prognosis malignancies. The pediatric advanced care-quality of life scale (PAC-QoL) has been developed to address this gap. The current paper describes the first two phases in the development of this measure. PROCEDURES: The first two phases included: (1) construct and item generation, and (2) preliminary content validation. Domains of QoL relevant to this population were identified from the literature and items generated to capture each; items were then adapted to create versions sensitive to age/developmental differences. Two types of experts reviewed the draft PAC-QoL and rated items for relevance, understandability, and sensitivity of wording: bereaved parents (n = 8) and health care professionals (HCP; n = 7). Content validity was calculated using the index of content validity (CVI [Lynn. Nurs Res 1986;35:382-385]). RESULTS: One hundred and forty-one candidate items congruent with the domains identified as relevant to children with advanced malignancies were generated, and four report versions with a 5-choice response scale created. Parent mean scores for importance, understandability, and sensitivity of wording ranged from 4.29 (SD = 0.52) to 4.66 (SD = 0.50). The CVI ranged from 95% to 100%. These steps resulted in reductions of the PAC-QoL to 57-65 items, as well as a modification of the response scale to a 4-choice option with new anchors. CONCLUSIONS: The next phase of this study will be to conduct cognitive probing with the intended population to further modify and reduce candidate items prior to psychometric evaluation. Pediatr Blood Cancer 2014; 61:1840-1845. © 2014 Wiley Periodicals, Inc.
2014-10
Cataudella D; Morley TE; Nesin A; Fernandez CV; Johnston DL; Sung L; Zelcer S
Pediatric Blood & Cancer
2014
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Journal Article
<a href="http://doi.org/10.1002/pbc.25115" target="_blank" rel="noreferrer">10.1002/pbc.25115</a>
Gemcitabine and docetaxel for the treatment of children and adolescents with recurrent or refractory osteosarcoma: Korea Cancer Center Hospital experience
adolescent; Child; Female; Humans; Male; retrospective studies; Survival Rate; Adult; Osteosarcoma; Preschool; Disease-Free Survival; Antineoplastic Combined Chemotherapy Protocols; Deoxycytidine; Republic of Korea; Taxoids
BACKGROUND: We evaluated the efficacy of gemcitabine and docetaxel chemotherapy (GEM + DOC) in children and adolescents with recurrent or refractory osteosarcoma. METHODS: Data of 28 patients (20 male, 8 female) who received gemcitabine (675 or 900 mg/m(2) on days 1 and 8) and docetaxel (100 mg/m(2) on day 8) at Korea Cancer Center Hospital were retrospectively reviewed. RESULTS: Patients (ages 5.0-19.7 years) received a total of 96 courses of chemotherapy (median 3 courses; range, 1-8 courses) and were followed for a median of 14.9 months (range, 0.6-81.4 months). Eleven patients received GEM + DOC after surgery as adjuvant chemotherapy. Seventeen patients received GEM + DOC as palliative therapy, and were eligible for response evaluation; there were three (17.6%) complete response (CR, including two metabolic CR), one (5.9%) partial responses (PR), and three (29.4%) stable disease (SD). The objective response rate (CR + PR) and tumor control rate (CR + PR + SD) were 23.5% and 41.2%, respectively. The median duration of response was 11.2 months (range, 2.8-14.6 months). Dose of gemcitabine (675 or 900 mg/m(2)) did not influence the response rate. Overall survival at 1-year was 53.6 ± 9.4% and patients who received GEM + DOC as adjuvant chemotherapy fared better than those who received GEM + DOC as palliative therapy (72.7 ± 13.4% vs. 35.3 ± 11.6%, P = 0.006). CONCLUSION: GEM + DOC showed some activity in osteosarcoma. Better than expected survival after GEM + DOC was seen both in patients with and without surgery. These results may indicate that dose dense combinations of gemcitabine and taxanes (e.g., gemcitabine + nab-paclitaxel) should be investigated in bone sarcomas.
2014-08
Song Bong Sup; Seo J; Kim Dong H; Lim Jung Sub; Yoo Ji Y; Lee Jun A
Pediatric Blood & Cancer
2014
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Journal Article
<a href="http://doi.org/10.1002/pbc.25035" target="_blank" rel="noreferrer">10.1002/pbc.25035</a>
Brachytherapy in children with rhabdomyosarcomas of the nasolabial fold
adolescent; Child; Female; Humans; infant; Male; retrospective studies; Survival Rate; Rhabdomyosarcoma; Skin Neoplasms; Preschool; Newborn; Disease-Free Survival; Brachytherapy; Facial Neoplasms; Nasolabial Fold
BACKGROUND: Rhabdomyosarcomas (RMS) of the nasolabial fold can be difficult to manage surgically due to functional and cosmetic limitations. Therefore, brachytherapy (BT) has been proposed to improve local control while limiting the volume of irradiation as well as the extent of the surgical excision. MATERIALS AND METHODS: Sixteen pediatric cases with RMS of the nasolabial fold treated from 1971 to 2005 were retrospectively reviewed. RESULTS: Median follow-up was 4.4 years (1.7-33). Half of the patients were male and their age at diagnosis ranged from 4 months to 13.5 years. Histological subtypes included 10 embryonal and 6 alveolar RMS. Initial treatment consisted of induction multi-agent chemotherapy in all cases. In 12 patients, BT was combined with local excision (4 complete resections, 1 with macroscopic residual disease, and 7 with microscopic disease). Low dose-rate brachytherapy was performed in all cases according to the Paris system, using plastic catheters implanted per-operatively. The doses delivered ranged from 50 to 70 Gy, depending on chemotherapy response, and surgical margin status. 10 patients relapsed: 4 local, 6 regional, and 2 metastatic failures were reported. The median time to relapse was 6.5 months. At the time of analysis eight patients were alive and four had died. Four cases, under palliative care at last check-up, were lost to follow-up. CONCLUSION: BT provided an acceptable local control rate, but the poor regional control of these cases may suggest a need for more aggressive management of cervical regional lymph node regions in RMS of the nasolabial fold.
2014-07
Mazeron R; Oberlin O; Dumas I; Kolb F; Goulart J; Rivin E; Haie-Méder C
Pediatric Blood & Cancer
2014
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Journal Article
<a href="http://doi.org/10.1002/pbc.24977" target="_blank" rel="noreferrer">10.1002/pbc.24977</a>
Outcome of children treated for relapsed acute myeloid leukemia in Central America
adolescent; Child; Female; Humans; Male; retrospective studies; Survival Rate; Time Factors; Leukemia; Preschool; Acute; Central America; Disease-Free Survival; Promyelocytic; Recurrence
BACKGROUND: Relapsed childhood acute myeloid leukemia (AML) outcomes have not been documented in resource-limited settings. We examined survival after relapse for children with AML (non-APML) and acute promyelocytic leukemia (APML) in Central America. PROCEDURE: We retrospectively evaluated outcomes of children with first relapse of AML (non-APML) and APML in Guatemala, Honduras, or El Salvador diagnosed between 1997 and 2011. Predictors of subsequent event-free survival (EFS) and overall survival (OS) were examined. RESULTS: We identified 140 children with relapsed AML (non-APML), and 24 with relapsed APML. Two-year subsequent EFS and OS (±SE) were 7.0 ± 2.5% and 9.1 ± 2.8%, respectively. Worse outcomes were associated with Hispanic or Indigenous heritage, white blood cell count at diagnosis ≥50 × 10(9) /L, and time to relapse <18 months. For those with relapsed APML, subsequent 2-year EFS and OS were 36.7 ± 10.8% and 43.4 ± 12.1%, although few patients survived beyond 3 years. 15.2% of all patients were managed solely with palliative intent following first relapse. CONCLUSIONS: Children with relapsed AML in Central America rarely survive, so palliative strategies should be considered following relapse in this population. However, children with late relapse or with APML may have a prolonged period of remission with second treatment, and consideration of re-treatment may be appropriate.
2014-07
Marjerrison S; Antillon F; Bonilla M; Fu L; Martinez R; Valverde P; Vasquez R; Howard SC; Ribeiro RC; Sung L
Pediatric Blood & Cancer
2014
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Journal Article
<a href="http://doi.org/10.1002/pbc.24942" target="_blank" rel="noreferrer">10.1002/pbc.24942</a>
Use of a clinical pathway to improve the acute management of vaso-occlusive crisis pain in pediatric sickle cell disease
adolescent; Child; Female; Humans; infant; Male; Young Adult; Pain; Pain Management; Adult; Analgesics; Prognosis; Follow-Up Studies; Prospective Studies; Critical Pathways; Anemia; Preschool; Arterial Occlusive Diseases; Sickle Cell; Tertiary Care Centers
BACKGROUND: The most common, debilitating morbidity of sickle cell disease (SCD) is vaso-occlusive crisis (VOC) pain. Although guidelines exist for its management, they are generally not well-followed, and research in other pediatric diseases has shown that clinical pathways improve care. The purpose of our study was to determine whether a clinical pathway improves the acute management of sickle cell vaso-occlusive crisis (VOC) pain in the pediatric emergency department (PED). PROCEDURE: Pain management practices were prospectively investigated before and after the initiation of a clinical pathway in the PED of an urban, tertiary care center with 50,000 ED visits per year and approximately 200 active sickle cell patients. The pathway included instructions for triage, monitoring, medication administration, and timing of assessments and interventions. Data were eligible from 35 pre-pathway and 33 post-pathway visits. Primary outcome was time interval to administration of first analgesic medication. Statistical analysis was by Student's t-test, using natural-log-transformed data for outcomes with skewed distribution curves. RESULTS: Time interval to first analgesic improved from 74 to 42 minutes (P = 0.012) and to first opioid from 94 to 46 minutes (P = 0.013). The percentage of patients who received ketorolac increased from 57% to 82% (P = 0.03). Decrease in time interval to subsequent pain score assessment was not statistically significant (110 to 72 minutes (P = 0.07)), and change in pain score was not different (P = 0.25). CONCLUSIONS: The use of a clinical pathway for sickle cell VOC in the PED can improve important aspects of pain management and merits further investigation and implementation.
2014-04
Ender KL; Krajewski JA; Babineau J; Tresgallo M; Schechter W; Saroyan JM; Kharbanda A
Pediatric Blood & Cancer
2014
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1002/pbc.24864" target="_blank" rel="noreferrer">10.1002/pbc.24864</a>
Association between religious and socio-economic background of parents of children with solid tumors and DNR orders
adolescent; Child; Female; Humans; infant; Male; retrospective studies; Survival Rate; Young Adult; Neoplasms; decision making; Adult; Parents; Education; Prognosis; Follow-Up Studies; Socioeconomic Factors; Resuscitation Orders; Religion; Medical Records; Preschool
BACKGROUND: The influence of socio-economic and religious background on decisions made by parents of children with incurable cancer regarding DNR orders is not fully understood. PROCEDURE: A retrospective analysis of medical charts of patients who died between January 2000 and January 2011 was performed. The following data were sought: written evidence of DNR discussion with parents, religious background, educational level, monthly income. RESULTS: There was evidence of a discussion on DNR in 73/90 charts. DNR consent was obtained in 14/17 (82.4%) cases where at least one parent had >15 years of education versus in only 24/45 (53.3%) cases where both parents had ≤15 years education as determined by univariate analysis (P = 0.03). DNR consent was also more likely to be obtained among parents of children with income >10,000 NIS (24/30, 80.0% vs. 20/38, 52.6%, P = 0.013). Parents of Jewish (22/30, 73.3%), Islamic (16/26, 61.5%), and Christian (8/9, 88.9%) background were equally likely to provide DNR consent. However, Druze families were less likely to do so (2/8, 25.0%, P = 0.036). CONCLUSIONS: The process of decision-making to a DNR request was associated with parents' educational level and monthly family income, and not by religious background, with the exception of Druze families.
2014-02
Hileli I; Weyl Ben Arush M; Hakim F; Postovsky S
Pediatric Blood & Cancer
2014
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1002/pbc.24712" target="_blank" rel="noreferrer">10.1002/pbc.24712</a>
When silence is not golden: Engaging adolescents and young adults in discussions around end-of-life care choices
Managing end-of-life care (EoL) is always emotionally taxing. Honest discussions about prognosis and EoL decision-making are often delayed due to questions about the legal competence of adolescents and young adults (AYA) to make decisions for themselves [1], providers feeling unprepared or without adequate skills to guide EoL discussions, or parental concern that discussing plans, including life support options or presenting an EoL planning document may send the message that the medical team wishes to withdraw care or that death is imminent. Data suggest that allowing AYA involvement in EoL planning can help parents and healthcare providers make informed decisions, alleviate distress, avoid decisional regret, and perhaps improve the patient’s quality of life (QoL) by respecting their values, beliefs ,and preferences [2–4]. This commentary addresses recent progress in the field and focuses on how healthcare professionals can approach advance care planning (ACP) with AYA, involve their family members, and engage the entire health care team.
Wiener L; Zadeh S; Wexler LH; Pao M
Pediatric Blood & Cancer
2013
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1002/pbc.24490" target="_blank" rel="noreferrer noopener">10.1002/pbc.24490</a>